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Posts Tagged ‘early detection’

“John, these stories you write about me are not really true!”

I asked some female nurses who I work with in my amubulatory surgery center what exactly the term “my wife keeps me grounded” means? One lady said that when her husband started talking about all the things he was going to do or get she has to remind him that, ” honey, we need to pay the house payment first don’t you think.”

It reminds me of the story that Lou Holtz, a coach that took Notre Dame to the national championsip, tells about the time he was invited to be an assistant coach at South Carolina and then when he got there with his family the coach that hired him was fired. This in turn meant that his job was gone as well.

As Holtz tells it he then made a list of all the the things that he planned to accomplish in his life. Things like meet the President, skydive, and of course win a national football championship.

“Honey, I have here a list of 100 things I plan to accomplish before I die,” he said proudly to his loving wife.

“Maybe you should add 101…get a job.”

If you are ever drifting off in church or thinking about something good to read get out a bible and turn to Proverbs in the Old Testament. Find the section of wives. Very illuminating and so true today.

“Read about wives in Proverbs like I said….You hear.”

From “The Decision.”

I was totally incontinent for about three months. I initially thought that diapers would manage the problem, but even the most absorbent brand would last only 45 minutes without getting heavy and beginning to sag down between my legs. I went back to work with a full patient load 11 days after my surgery. It quickly became apparent that a diaper alone would not work. Going back and forth to the restroom in between every four or five patients got old very quickly. I then tried the technique of adding an absorbent liner inside the diaper and only changing that, but the liner was cumbersome as well, and still I had to dispose of and replace it several times a morning. I soon found that the only thing that would let me have freedom from all the paraphernalia related to diapers was a condom catheter. We used to joke as urology residents, saying, “I’m going to go empty my leg bag,” instead of saying we were going to go to the restroom. There were residents who would take condom catheters from the urology clinic and put them on at baseball games so they could drink beer without the inconvenience of going to the stadium restroom. I ordered several types to try out (I won’t tell which size I ultimately used) and actually got along quite well with them. The ones I used were like a condom with sticky glue on the inner surface. As you roll it on, it sticks to the skin and forms a water-tight seal; the end of it has a spout that connects to a tube and a bag that attaches to a leg, hence the term “leg bag.” I could wear this under my scrubs and no one knew I had it on. I worked in the office, operated, and even taught youth Sunday school with this set-up undetected. This system malfunctioned and popped open only once. This soaked the pant leg of the scrubs I was wearing, but no one saw it and I was able to correct that quickly with a new pair of scrub bottoms. There was an ever-present fear that it might leak at an inopportune time, but that never happened. I had told very few people who I had had my prostate removed, so hardly anyone knew that I had a “leakage” issue and was wearing a leg bag. I would be speaking to a patient about what they should do for their prostate and answering questions about incontinence, all the while wearing my leg bag. It was an odd time; I elected not to tell patients about my situation. I bet in those three months of wearing protection that I must have treated hundreds of patients with prostate issues. “What would you do if it were you?” they would ask as I could feel my leg bag filling up. The bag holds about a pint, so I could feel it getting heavy and bulging the scrubs at the calf level of my leg. If you let the bag get too full, then it begins to pull down on the tubing, which in turns pulls down on the condom, which pulls down on the… You get the picture. With time, as I am sure it is with most inconveniences that patients endure, all of the issues associated with the condom catheter became second nature, just part of my life.

 

I would take off the condom before my shower and then jump around to see if the leaking had improved, and each morning for those three months, I was disappointed. Following the shower, I would dry the area to perfection and then carefully roll on my condom catheter and begin the process of hooking everything up. I had a routine that took about 15 minutes. On one particular morning, some of the skin of my “you know what” was very irritated and little blisters were all over the skin, particularly where urine would contact inside the condom. The condom catheter’s glue made taking off the condom a very unpleasant experience, as it would pull at the irritated areas of skin and open the blisters as well. It was very painful to take off the old and miserable to then put on the new. I remember being quite depressed by my situation that morning, more so than usual. As if it were not bad enough to be leaking all the time, now my system for dealing with it was also problematic. The thought of wearing this contraption all day, considering all the movement and discomfort that this entailed, also added to my despondency. The other issue was that if the skin kept getting irritated, I would not be able to use the condom catheter and would have to go back to diapers. I was pondering my plight and was just about “situated” when my wife entered our master bath. I was stooped over in order to connect the rubber straps of the bag to my calf and looked up at her. She looked at me oddly and with what I perceived as a look of concern. I thought that maybe she had detected my frustration and slight depression. I remember being disappointed that my true feelings might have been revealed, as I had been trying to down-play to my family the pathetic “urinary” situation that had become my life. By the way she peered down at me I was sure she was going to ask, “Is everything O.K?” She then said,” John, I think I see a black hair on the tip of your nose.” Somewhat relieved, as I connected the last leg strap, I said, “Thank you dear.”

 

 

 

                        

 

 

 

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Isn’t she gorgeous? Orators become dumb when beauty pleadeth.

Two days after I had my prostate removed….the five year anniversary is today(I think) my wife and I set off to the condo on Orange Beach, Alabama. In a way it is a blessing and a curse we did that. I have horrible memories of the time that I remember every time we go there and then I have wonderful memories for exactly the same stimulus. Go figure. The above picture was taken at the condo there about a week ago. The lines, the checks, the shadows and then…my two girls.

But more importantly during this difficult time (basically not knowing what the future held regarding the two “I’s” (incontinence and impotence) was one of the best times of my marriage. I have a friend whose wife could not deal with all the “sh..” associated with prostate cancer and ultimately abandoned him. In my situation, just the opposite. It was absolutely a beautiful thing and a thing I will not ever forget and something I harken back to if some small incident in marriage encourages me to be petty. I have said previously that in many ways I wish that now was like then. Really…it was beautiful. No doubt that I had the support of a loved one. No doubt my friend.

It was not clear to me untill I was reviewing my book, that I realized how intertwined my wife was in the entire journey, particularly keeping my children informed about my situation. I could not do it.

Anyway the story associated to the link below is around that time at the beach after my surgery and is cute and a bit informative to the male in a similar situation or one not knowing what to expect.

Also…mother’s day is coming up… and it is with moistness in my eyes that I tell you that my wife of 30 so years has never “dropped the ball” (as my mother would say) or has she ever disappointed me or my children as a mother…(to include my post prostatectomy experience.)

Okay…the picture above…they are indeed both gorgeous…but I am referring to my silly little ole wife. (She adores Penelope too, by the way.)

https://theprostatedecision.wordpress.com/the-female-side/incontinence-after-surgery-it-will-probably-be-the-wife-buying-the-diapers/

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What gets us into trouble is not what we don't know it's what we know for sure that just ain't so? Twain

A couple of things about my deceased brother Rushton. First of all of my four brothers he was always the kindest to me. Jeff my youngest brother doesn’t count…as mother said he was “the baby.” Rushton always chose me to be on his team in football…he could throw and I could catch and we were deadly, “Down and out John and I’ll hit you.” Nothing like it, on a slanted makeshift football field behind a neighbor’s house just off Flint Drive in Columbus, Georgia we were hard to beat. Nothing against my other brothers, he was a kind loving person with an absolutely big heart. People loved Rushton, or Rusty as he became to be called. Mother called him Rushton and so…as usual in deference to the mother I adored, I did too. I thought we were alike, I mean really kindred souls and spirits. What? A so-called hippie and musician and the fourth child with short hair and glasses and always going to “algebra parties.” That’s what my brothers would say about me to the question, ” where is John.” It was okay. Rushton loved me, mother loved him, he was kind, he gave me his 69 Camero, he visited me when I had to live with my father in his Camero when it was new and he had just bought an 8 track tape player and the Beatle’s White Album and Sgt. Peppers Lonley Hearth Club Band and we listened to every bit of both in the car outside the “converted dog kennel” that I lived in with my father and his “hussy” of a wife (my grandmother’s words” that he used to make and paint magnetic signs. He was all I had at that time except Jeff who was about 6 and my mother who came and picked me up once a week to go to LaGrange deemed acceptable by the “courts” of Marietta, Georgia.

Anyway years later and Rushton is a local hero at the Florabama in Gulf Shores, Alabama he develops throat cancer after having performed there for over 18 years and our entire family vacationing there and going to watch him perform there for years. And then I learn this. Two things I did not know: He love John Mayer and the Bose Radio. Well three things, he love watching cowboy movies with no sound. (The treatment of the throat somehow made him hyper sensitive to sound and air vents…so I guess no sound was part of that side effect of his treatments.

A Bose Radio? He was an expert in everything music so when he told me he loved his Bose it meant something to me. I to this day don’t get the John Mayer thing. I mean he is good, but I did not see Rushton going there. You’ll see from the song that his style is a bit different. But that too meant something to me. The guy that gave me the Almand Brothers before they were known, The Beatles, Traffic, taught me how to play guitar, Frank Zappa (yes Bess Frank Zappa again-Rushton exposed me to the Mother’s of Invention when I was in the seventh grade) and incessantly tried to get me to smoke pot. Don’t know really what that was about but every time I’d turn around I’d be with a group of his friends telling me they can’t “believe you two are brothers” and did I want a toke?

So the picture above? Bose headsets I got for my birthday from my wife’s parents last year…the noise reducing things. I am listening currently to Moby Dick. It is grand! I can listen while I cut the grass at the lake or while, as above, as I fish. Here is the Pepster and little baby breeder, a stick and you can see the headphones. Okay a bit wierd if someone happened upon me and saw two weinner dogs, me throwing sticks to a Lab and all the while fishing (I might add catching) and pulling bass.

On another birthday I bought for me for my wife’s gift for me (follow that? try sometime you always get what you want) for my surgery center. I plug my iphone into it put on pandora and viola play about 15 stations during the course of an operating day. Favorite station on Pandora of the girls and nurses that I work with in the Operating Room? No contest? 90’s Pop.

Once again Off Topic but the reflection and shawdows of the headphones today at the lake was too much to ignore. Made me think of my beautiful gone brother Rushton. We all loved Rushton, but man did my mother love him.

Nostalgic? Well my birthday is on the day that the Titanic sunk and the day that Lincoln died. Can you guess?

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and the "eyes" have it!

Chapter Two-A dog shows up at the lake

“Chloe’s Gift” by John McHugh

(Changed Rob to John)

John and Karen had two other dogs, Oscar and Tootsie, both of whom they loved dearly, but there was an emptiness around their home without Meg. The couple felt her memory and presence everywhere in and about the house. The couch, the trampoline, the backyard, the bedroom, the children’s rooms, the porch, and years and years of pictures with members of the family framed throughout the house, served as a constant reminder of Meg. The two remaining dogs were dachshunds; Oscar was the grouchy father, and Tootsie, a high maintenance daughter. The female dachshund next door had been the mother. It had been an “arranged” marriage.

“I miss having a big dog around here John,” Karen said.

“I miss having a dog that likes being in water,” John replied.  He thought, “Dachshunds are like cats, they do not like water and don’t swim.

John and Karen had a small piece of property on the lake near their home. They rarely spent the night at the small cabin on the site, but very much enjoyed going there for “day trips” and always got home before the time the street lights came on.

John and Meg could easily consume a Saturday at the lake with cutting grass, fishing, and working in their small garden there. They often visited the big box stores for stuff needed for whatever they would be doing that day. Meg loved riding in John’s truck, ambling around the property, and dipping into the lake for a swim from time to time as John worked.

“John, what on earth do you and Meg do all day out there?” Karen often asked.

John and Meg looked at Karen in unison and agreed that Karen just did not “get it.”

“Well Karen, Meg and me don’t have nothing to do out there, we got all day to do it, and we may not get but half of it done.” John answered. He wasn’t sharing their secrets.

With Meg gone there was a void on Saturdays, not only at home for the couple, but also for John at the lake. John attempted to make the dachshunds his “lake dogs,” but they did not like water and just made a mess out of his Saturdays. Oscar hated it at the lake preferring the warm and known confines of their home and being a lovable grouch on his turf. Tootsie loved riding in the truck to the lake; she loved to cuddle in the warmth of John’s jacket. However, Tootsie was always doing something meddlesome. She explored to the extent that John spent the majority of his time looking for her or keeping Tootsie out of trouble.

On one occasion John lost Tootsie for about two hours though it seemed like an eternity. During the time she was missing, he frantically searched the shore of the lake, the cabin, and the surrounding area. He envisioned Karen chastising him for not “taking care of Tootsie.” All of his worst fears as to her safety ran through his mind, only to find her on top of the boat dock. Tootsie had no problem climbing the steps to the top of the deck, but once there, she would not come back down. He found her accidentally because he saw the silhouette of her small head on the horizon of the dock flooring. His fear of finding the more worrisome silhouette of her body floating in water hence relinquished, John commenced to chastise her under his breath. (Tootsie’s head is small for her body.  John’s head is small and Karen often made fun of him for it. John’s mother said her first memory of John as a baby was that he could, “cover his whole face with his hand.” On his high school football team in LaGrange, Georgia, he wore the smallest helmet. It was a size 6 and 7/8, and was specially ordered for him. Karen told John, when she perceived he was gaining weight, “John, you need to be careful about gaining too much weight or you’ll start looking like Tootsie. Your head won’t match your body.”)

On another fateful day at the lake, Tootsie chased a mouse or some other rodent under the cabin, which had only a six-inch crawl space, and it took several hours to determine where she was. Once found, she would not come out and there was no obvious way to get to her or to get her out. Complicating the situation and intensifying the anxiety for John, it was not clear if Tootsie was trapped or just would not come out. Exasperated and about to give up, John found a neighbor with a skill saw to cut a hole in the cabin’s kitchen floor to “rescue” her. The sawed out square of flooring replaced the hole in a patch-like fashion serving as a reminder of that day’s three-hour ordeal because of Tootsie.

“Karen, I am not taking Tootsie out to the lake anymore. She is a good truck dog and likes to ride, but she is way too much trouble for me out there. I can’t get anything done with her. She gets into stuff. “Dachshunds have a Napoleon complex and that’s her problem,” John thought. He, however, did take her again. It would be a mistake to do so, and it would be the last trip to the lake for Tootsie.

The “last” time Tootsie went to the lake with John, she played the “Napoleon role” that only a foot-long dachshund can do with the great dane puppy which lived next door. She barked and taunted the dog until it grabbed her like a pillow, shook her, and then threw her thirty feet. All of this transpired in a matter of seconds, right in front of John to his amazement and chagrin, while he was raking leaves and listening to a Georgia football game. Tootsie’s run in with the great dane resulted in a trip to the vet, a V-neck T-shirt soaked with Tootsie’s blood, ten holes in Tootsie’s abdomen but no damage to her intestine, two hours of surgery in which John assisted the vet, fifty stitches, and another ruined Saturday at the lake. No, Tootsie was not to be another Meg, and she would not be going to the lake anymore, period. To make matters worse, on the day Tootsie came home, John was holding her in his arms, and was about to give her cheek a kiss when she snapped up and bit him on the tip of his nose. He dropped her to the floor out of shock and a bit of anger, only to find her running to Karen. Karen now became the “good-guy” and Tootsie’s savior in this, which further aggravated John.  Karen then laughed uncontrollably at the situation and particularly at John clutching his nose.  John ’s nose was now bleeding profusely, and when he checked it out in the mirror there was an inch long scratch which was deep and devoid of skin. The area subsequently scabbed over and for two weeks was a painful and visual reminder of the little ungrateful troublemaker that was Tootsie.

“Dr. McHugh, what happened to your nose?” John was asked a thousand times over the ensuing weeks.

“My dog bit me,” he answered. Having to respond to that question in light of the history of the event was “salt on the wound” to John. He did, however, forgive Tootsie.

Several months later after blowing leaves at the lake, John alone and without a lake dog, was resting on an old spring swing left at the lake by the original owner of the property, Jessie Jewell. He saw a small puppy walking up the gravel driveway. The lake property is at the end of a road that has a cul de sac. His first thought was that someone had dropped off the dog and left it. As the puppy approached, her gait and color made John think that the visitor was a golden retriever puppy and probably one of a neighbor’s dogs. It walked nonchalantly to where he was sitting and sat down right next to him. It was as if she was already his dog and that what she was doing now was what she was accustomed to doing naturally and often.

“Well, what’s your name, cutie pie?” John asked somewhat taken aback by the level of the “make yourself right at home” nature of this stranger.

The dog’s tail began wagging as it looked up at John contentedly. John determined that it was a female, and as best he could tell, she was a thoroughbred. He figured that someone was probably missing her pretty bad about now.  She had no collar. It was unknown to John at the time that this was a foreboding sign. He picked her up, held her in his lap with her belly up, legs open and apart, and began to rub her.  To John, a dog that will let you rub its belly is an “at peace” dog and a prerequisite characteristic of one you’d want to have. Oscar would not let you do that, but Tootsie would.  This dog was as laid back as you please to be on her back and be rubbed, particularly behind her ears.

“I think I’ll keep you my little friend. Do you like the water?”

When John and the new dog arrived home that evening, he said as he entered the house, “Karen, guess what showed up at the lake today?”

Karen immediately said, “She’s pretty. Look at her tongue; it’s got a black spot on it. That means she has chow in her.”

“You don’t know that Karen. A black spot on the tongue? Are you kidding?”

“It means she has Chow in her. I bet she is a Golden-Chow.”

Karen was right about the puppy having Chow in her as evidenced by the way her bushy tail always was curled up over her back. None of the neighbors near the lake cabin reported losing a dog and so the family adopted the golden looking puppy as their own.

Bess, their middle child who was in sixth grade at the time, named the new pet Chloe. The new dog was the same color as Meg and since Meg was named after the spice, nutmeg, Bess wanted to name her after another brownish colored spice. She thought chloe was a spice as well.  That chloe was not a spice was something that John and Karen did not note, but would not have corrected it even if they had noticed the error. John, a poor speller, the next day went to PetSmart to make a tag for her collar, but spelled her name “Clohe” much to the sarcastic delight of his family who never let him forget that he spelled her name incorrectly. Named for a spice that wasn’t, and having to wear a tag with the wrong name on it may have very well been a glimpse into Chloe’s unpredictable future.

The couple and their family fell instantly in love with the gentle intruder. As John’s mother would say, “One man’s loss is another one’s gain.”

The “gift” and the coming saga that was Chloe then commenced; the extent and complexity of which was unknown to John or Karen at the time. Chloe on the other hand, knew exactly what was to come and the role she’d play in the lives of John, Karen, their family, and more importantly, other lives.

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light travels faster than sound...that is why some people look smart until they speak...

Chapter One – Meg

By John McHugh

Rob, a doctor, received a phone call at his office. It was his wife Karen.

“Rob,  I have decided to put Meg to sleep. The vet is coming at lunch to give the shot. If you want to be here, that’s when I am doing it. I cannot bear to see her like this anymore.”

Rob left work after his last morning patient, and arrived home as the Veterinarian was leaving. She offered a pleasantly restrained yet consoling type smile as they passed each other.

“She is up in the woods,” she says pointing to an area of trees at the edge of a garden.

Meg had been sick for months now. She had an abdominal cancer which was not operable, and had been slowly losing weight despite her belly increasing in girth. Rob and Karen had debated for weeks about the timing of putting her to sleep, but had not reached a consensus about when, where, or how to do it. Rob had wanted to wait until a time more definitive of impending demise not willing to throw in the proverbial towel, Karen elected to take matters in her own hands. She had seen enough.

When Rob arrived at the spot in the woods alluded to by the vet, Karen was sitting with Meg. Meg had the appearance of sleeping comfortably in Karen’s lap. There was a shaved spot on Meg’s front leg with an I.V. in it. As he approached it became clear  the Vet had already injected the life ending medicine.  Meg was motionless, and Karen was crying. Karen crying was as gut wrenching to him as it was seeing Meg lifeless. He instinctively knew and felt the emotional rollercoaster Karen had been through that morning.

“I am so sorry Rob . I could not look at her anymore. I don’t think it has been fair to her. I hope you don’t feel I have been unfair to you. The time had come. Please don’t be disappointed in me for doing this.”

Rob said nothing. His eyes moistened as he sat down next to Karen and began to stroke Meg’s hair; that familiar, soft, and beautiful golden hair which was so characteristic of their beloved golden retriever. It was the same hair which Rob,  Karen, and their three children cuddled in time and time again, and had come to love for over fourteen years.

After about thirty minutes of silence and the rush of memories that filled both of their hearts, Rob said, “You go in and I’ll burry her.” He had begun digging the hole to bury Meg several weeks ago. The spot was just a bit further into the woods from where they were sitting and the reason Karen chose that particular spot to end Meg’s suffering.

Karen said, “I can help you.”

“That’s okay, I finished the hole last night, and I would like some time alone with her as well,” Rob said.

He put Meg in a large trash bag, which he had put in the grave days before, and very carefully placed her in the grave. He positioned her in the bag and placed her head in such a way as to protect her beautiful face from the weight of the forthcoming earth. The first dirt he placed on Meg he did with his hands being careful not to let it land directly on her head or where he thought her eyes would be. Once she was completely covered in dirt, he then used the shovel to complete the task. He got the rocks which he’d collected over the last several weeks in anticipation of this day, and spelled “MEG” on the top of the grave. He then sat alone. Quietly remembering all she had meant to him and his family, he wept.

To be continued………

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grumpy old men were grumpy young men...what does that say about someone dr. peters age doing research on sexuality after prostate cancer?

Right where I caught this fish at a cabin I have on the Chattahoochee River in Northeast Georgia, it’s a shoal bass and what a joy to catch in the summer, is where Dr Peters visited me a year or so back. Fishing from a rock (shoal) no shirt on a beer near by and the sun and penelope near by…it don’t get no better than that.

So Dr. Peters emails me and says she is going to be driving through Georgia on a trip through the U.S. and wants to drop by to meet me. Well…I mean from Canada…the hell? It turns out that I was having a party at the river for the operating room staff at Northeast Georgia Medical Center the very weekend she was to be in Georgia. So I suggest to her that she should just come to the party.

I am greeting guests and up comes a 2011 or so black Corvett. The hell? Dr. Peters and her husband hop out of the car, we introduce ourselves and walk down to the cabin and river where this fish was caught. Cool huh? Dr. Peters is cool. She met Penelope and Chloe.

She reminds me of the song by Elvis Costello, ” Veronica.” She reminds me of my mother when I saw her dance at the kitchen sink when “In the Mood” by Glen Miller came over our A.M. radio when I was in high school. “You were young one day too?” I know it is obvious but is it?

Ever since that day at the sink I have viewed people older that me with a vision as if I were veiwing them when they were young and in their prime. Like the feeble old fellow yesterday in my office hobbles in with a cane and a WWII hat on. “Where did you serve.” Do you realize the history in this beautiful old man what he has experienced. You have to make yourself think that way otherwise you gravitate to the fact that he is just a man that is older.

“I’ve written a book about it…I was in Pearl Harbor for the first shot and in the Pacific for the last.” The hell? Gainesville, Ga’s Mack Abbott

All of this to say that Dr. Peters is the real deal and has put her extensive education and experience to bear in this endeavor. An absolutely invaluable resource for the male to consider “before” treatment and a “survivor’s manual” of sort for those after treatment.

Thank you Dr. Peters!

Dr. Jo-An’s Introduction

Dr. Peters Sexual Survey at PCAinAZ.org

When I first started my blog around two years ago and about 450 posts ago there was a delightful person from Canada or South Africa (she is all over hell she may be from Arizona for all I know) who followed my site and made me feel like I was making a difference for some folks facing the challenges of prostate cancer. Dr. Jo An Baldwin Peters. It started as I remember when she emailed me an account of getting out of South Africa with a horn from an animal that was illegal to have leave the country. I think she smuggled it out at some expense of time and inconvenience but I believe she probably has it in one of her many homes.

What she is about, however she can tell you much better than I can, is sexuality after prostate cancer treatment. If I have heard her say once I have heard it a thousand times…”penetrative vs. non penetrative sex” or some such. Any male undergoing any treatment of prostate cancer better know the difference from the get go.

What she and her co-workers have accomplished is something that is simply not out there in the literature and that being an exhaustive sexual survey. The comments below address about every issue imaginable regarding the subject from folks that have actually been through the process.

The biggest complaint I see on the internet is that a particular doctor “ruined” my life by performing a procedure that took my sex life from me. Like it was a surprise. That the doctor did it to them. And now they are angry. How can that be? Somebody did not do their job…either the doctor or the patient…or both.

It is clear to anyone doing any semblance of research before any treatment of prostate cancer that there will be a sexual side effect of some sort to the treatment…”there ain’t no free ride.” Or as I say in my book comparing surgery to radiation…”Pay me now (surgery) or pay me later (radiation.)

If one were to read all that is here at the PCAinAZ and the sexual survey one would be well on their way to understanding not only prostate cancer in general but the sexual ramifications in particular of the potential effect caused by all prostate cancer treatments.

Oh yeah…don’t forget about the concerns about incontinence and cure…remember…the Trifecta…sexuality is only one of the componets.

Be sure to watch the introduction by Dr. Peters…she is one character my friend.

Dr. Jo An Baldwin Peters Sexual Survey Comments

PCAinAZ – A service of ARIZONA US TOO

Prostate Cancer & Sexuality

General comments/feedback about this survey

answered question 149
skipped question 336
  • “1. SOME QUESTONS DID NOT PROVIDE A COMPLETE RANGE OF ANSWER OPTIONS (I.E., YES/NO)  2. WHEN AND HOW WILL THE SURVEY RESULTS BE MADE AVAILABLE? THROUGH EMAIL TO SURVEY PARTICIPANTS?”
  • “1.Better than half the men in my support group – even those over 65 – tell me they do not have much of an erection without taking the sidenfal class medications. Those who do take these type of drugs generally report good results; of course, that’s why they take them. Yet very few of us – and I have the resources to pay for these meds out of pocket – can afford the cost. Thus, we go without sex more than we, or our spouses, would prefer. Under my current insurance – BlueShield – I get 6 Cialis per month with a prior authorization. The PA reduces the cost from $115.00 for 6 20mg. pills to $45.00 for 6/20mg. The sidenfal like meds. have an even greater importance than facilitating individual occasions of sexual penetration. More importantly, the medication offers nerved damaged survivors to have normal morning and even spontaneous erections. This is certainly true for me, and many other men tell me they have similar experiences. This ultimately more important than individual sexual interactions! Why? Because having a normal erection has a tremendous effect on a man’s sense of sexual identity and potency. It imparts a sense of psychological wholeness which, in the absence of the medication – ergo an erection – one feels otherwise impotent. Fortunately, I am married and get support and encouragement from my wife. However, lacking a secure and supportive relationship with a mate, I can envision few men who would feel comfortable initiating a potentially intimate relationship based on an occasional pill.In short, prostate cancer survivors who are fortunate enough to have sufficient nerve function to support an erection using sidenfal like medications, should (must) have access to the drug on a daily basis for it to be truly effective and for the patient to receive the greatest benefit. 2. I spoke with several doctors before opting for a form of treatment. Several Urologists addressed the fact that I would lose most erectile function following surgery, and that rarely if ever did one have escape some permanent peripheral al nerve damage and corresponding dysfunction. However, none of the physicians I consulted a single doctor ever discussed shrinkage or diminished size that accompanies the surgery. This came as total shock and to me and still bothers me a lot.”
  • A complicating factor is that subsequent to cancer treatment I also developed Peyronies Disease.
  • after 6 months, still unable to get full erection even with medication ( i have tried all 3 pills)
  • After having a highly active sex life it has been an interesting time not being able to have a natural erection most of the time and then, when I do, it is not that “full” and difficult to maintain. I personally feel my libido has declined as well. I think it is critical to have an understanding partner who will experiment and will try different things to make both of us satisfied with the outcome.
  • “After my surgery I tried Viagra but the side effects were distracting and didn’t produce much of an erection. I used a vacuum pump that produced a erection that permitted intercourse and used that for years. About 2 years ago my wife had her own health issues and we stopped sexual activity. Now the pump doesn’t work for me, but my wife is not interested in sexual intercourse (never really has been). About weekly or every other week we engage in mutual masturbation to climax for both of us. I doubt that I could get an erection at all. We are both 69 and things are great beyond the bedroom. For our entire married life, my wife would not engage in conversation with me about our sex lives. She would not complete this survey.”
  • After the first three months I was able to maintain an erection for two to five minutes with a lot of help from my wife the time was expanded up to 20 to 20 minutes. At this time I was using lavetra. As time has progressed I no longer have needed to use the medication.
  • “After the first year (post-operative) I started to get erections and enhanced them using Viagra. The differences between sex prior to prostatectomy and post were a huge shock ! The surgery had reduced the size of my penis – erections were not si strong – orgasm was “”strange”” and sometiomes painful ( I could feel nerve pain ) and the lack of the ejaculatory sensation was disappointing. Most dramatic is my loss of libido – I think largely because I remain incontinent the whole issue of sex – desire and comfort – is diminished. We had a great sexual relationship – vigorous, creative, frequent and important to both – and I know that I have subliminated my sex drive due to three main issues: a) incontinence b) penile size and strength c) loss of orgasmic sensation ( meaning the sensation I experienced prior to surgery – )”
  • Again, I think it is important that the doctor visit with both husband and wife. I think my wife may have been more interested if she realized that my sexual desires were normal for a man of my age (65 ) at the time of surgery.
  • Although, I have know most of my adult life that I had strong homosexual tendencies I was able to have successful intercourse until a few years before my diagnosis when my wife essentially lost all interest in sex. I was forced to resort to masturbation only to satisfy my sexual need but I seldom had any problem achieving orgasm.
  • anxious to find a way……. hope you succeed in helping us.
  • As a gay man after surgury, I have not tried penetration or intercourse. I do not use devices nor medication nor stimulation, per se. But I do have solid, long lasting erections and (dry) orgasams
  • As stated in the survey I had a duel implant in 2006, that same year, after almost 30 years together, my wife left me. I think I was partly at fault as I had sunk into a deep depression over the fact that I was about 95% incontinent and 100% impotent, 3 years after surgery. At the same time my PSA started rising and I under went 36 radiation treatments. Recently my PSA started to go up again and I just finished my first round of Lupron. I have had one sex partner since and we were both satisfied with the implant.
  • “At the beginning of treatment intercourse could be maintained with medications. Then the meds stopped working. We have had little luck with a pump. Therefore, foreplay and mutual masturbation are the result in sex. Now, ten years later, I have little interest as does my wife. Her medical issues compounded with mine has pretty much taken the desire away. The hormone suppressing meds, Lupron, has been the major issue for this”
  • “At the time I was diagnosed with PCa I had a partner and she was somewhat helpful during that initial diagnosis. She was extremely disturbed and upset about the diagnosis as she had an uncle that died 6? months after diagnosis. I also had and still have low libido, possibly due to a benign tumor on my pituitary. Currently I have no partner and very little interest in sexual activity and I am fine with that. I have a number of female friends including my ex-partner.”
  • At the time when I found out that I might have prostate cancer, my creative energy slumped to the point where I could not follow through with any of my visual art projects although I was still able to maintain my writing. My main concern was to go through with the surgery for my family’s sake and of course my own not realizing the psychological impact of not being a sexually functional male with a very short penis. After my operation I tried to get back into my art with hardship until I hit by chance on the notion to draw my own penis very large with its malfunctions in ones face as it were. These drawings I have shown other people and in fact have shown one in a gallery. I was then face to face with my demons. I don’t know if this could be a help to anyone else as I would think that there are a lot of men out there who are suffering quietly with their loss. From my own experience, I would have a tendency to let other men know that what they need to do is expose themselves to themselves and others as well through whatever means they have to work with. It will seem hard at first but once they let the cat out of the bag, it will become easier and they will feel the burden lessoning. Thank you for your survey.
  • Attempts at sexual intercourse also complicated by wife’s back problems.
  • Because of my sexual orientation it was difficult to answer some questions
  • CAVERJECT WORKED UP TO THE TIME THAT THE PENIS DEVELOPED A BEND TO THE LEFT MAKING IT DIFFICULT IF NOT IMPOSSIBLE FOR PENETRATION. Am currently participating in vacuum therapy to try and rehabilitate the penis and have been advised to no longer use caverject, followup appointment will be scheduled in about three months.
  • comprehensive
  • “Cryosurgery gave new meaning to the term “”knock your dick in the dirt”” cause it is deader then a doorknob. Only a shot gives me an erection and it’s too uncomfortable to have sex with it. A pump is meaningless so basically we just go with out. appreciate the survey though as it does give me an opportunity to address this with the wife”
  • Despite the fact that one of the first question was wether I was striaght or gay, the survey question were very heterocentric.
  • do not use medical aids as of yet………….maybe to early for me to know all this for now…that might be down the road for me.
  • “During the preliminaries preceding intercourse, there is an un-controled leakage of urine from my penis. Although th amount is small, that is a turn-off for my partner, especially compounded by other “”distractions”” when we interrupt the preliminaries to use of the pump in order to get a more sustained erection. I have yet to find something to read on this subject and what can be done about it.”
  • Excellent survey; I look forward to the results. In my situation, the problem is not getting an erection, but sustaining it until my orgasim. The penal ring solves this problem, but I know that I have to have an orgasim before thirty minutes, so it limits us somewhat. I have had 6 relationships of varying lengths since my treatment, and both my partner and I have been able to have a very active and enjoyable sexual aspect. However, first and foremost, I always choose a relationship with people who also value intimacy, as I do, and the sexual apsect is just a fantastic bonus. I believe a big part of this has been my enjoyment of giving oral sex, witch all of these partners have enoyed tremendously, so I do not have doubts about whether they are also “feeling fulfilled/satisfied”. I have come to conclude that intimacy, foreplay and oral sex are valued far more than penile vaginal penetration (or maybe I have just been lucky enough to have had relationships with mature, enlightened woman of like mind). Lastly, if it comes to the point where the oral medicines no longer work for me, it is nice to know that I have the trimix injections standing in the wing, and when no aids work, i know that with the right partner,we should still always be able to have a very active sexual aspect to our relationship and enjoy orgasims together. If you want to contact me for any clarifications, or whatever, my name is Don and the email address xxxxxx one other thing …am new to this area and now have a new urologist, the top rated (by physicians in this state) urologist. I did not relaize how blessed I am. He said that with my RRP combined with the adjunctive radiation therapy, it was extremely rare for someone to be in my situation with regard to erections. He even asked me to attend the local PC Group, at least once, to let them know that “all is not necessarily lost”, and I did just that.
  • “First a comment section on dx was greyed out– no typing accepted. How to put this in??  In early Feb, 2006, I experienced double vision while reading, with bilateral arm raises possible, hearing ok, no speech impediments or CNS signs. When same thing happened again the next day, I made an appt with opthamologist, who literally ran me out of his office after his MA took BP. I went to another clinic and asked them to take a BP and they reported 240/120.   Follow up MRI revealed hydronephrosis, with lympodema on left leg. Left obdurator nodes obstructed, as was left ureter; left kidney was not working and collapsed. Bone scan lit up all along spine; bx showed GS of 8, and PSA of 50; pretty good for a first dx, eh?  The second urologist made a big deal out of the high PSA, and blamed me for not “”doing something,”” what was not stated. The 1997 PSA of 4.7 was not in my chart, and was done by a previous medical organization. A shock to be sure. Every doctor told what he could do—no one listed the range of choices, nor other specialities. No one talked of side effects or sexual problems, or incontinence, or scarred tissue, etc. Not to mention chronic fatigue, emotional liability, depression, sources of information, etc. Had not had sex in 10 years, so nothing was noted as””failing, or hindering.”” DX was acomplete surprise. Father died at 64 of unknown disease, was predecesed by his brother; grandmother brought heart disease into family, and had PTCA done several times in 1997, with ultimate LIMA, which helped immensly; went vegaterian, had always exercised, lost some weight (BMI was never >26), but worked at being heart healthy. No thought given to PCA. Had annual stress tests, met with internist regularly, but no PSA was done at any time to my knowledge.”
  • “First, thank you for doing this. The fight against prostate cancer needs all of our help. Ironically, prior to my biopsy, I was asked to participate in a Mayo Clinic research study of “”false negative”” PSA readings. At the time of my diagnosis I was at 1.2, low for a 50 year old.”
  • “Following surgery, I regained contenance in 2 weeks, and sexual activity with help of viagra in 6 weeks. At 3 months, no longer needed viagra. A couple of duplicate questions (maybe intentional?) that might give you some conflicting answers. Some questions seemed to be NA depending on how one answered the preceeding questions….so again, may impact the overall analysis slightly since NA was not a possible answer. In any case, hope this servey helps people, and look forward to seeing the overall results. Good luck!”
  • FOR QUESTIONS 5-59 I USED THE TIME PRIOR TO SURGERY. IF IT IS POST SURGERY, ALL OF MY ANSWERS ARE WRONG. SORRY. AGAIN, THANKS FOR THE ABILITY TO COMPLETE THE SURVEY AND ALLOW ME TO MORE FULLY UNDERSTAND MY CONDITION. I WISH THAT I HAD TAKEN MORE TIME TO RESEARCH MY CANCER BEFORE I HAD MY SURGERY. I THINK I WOULD HAVE WISHED TO WAIT AND GATHER LOTS MORE INFORMATION BEFORE “GOING UNDER THE KNIFE”. mY LIFE WILL NEVER BE THE SAME. I’VE SINCE LEARNED THAT SOME CANCERS ARE SLOW GROWING. I DID NOT KNOW IF MINE WERE. IF IT WERE “I SURELY WOULD HAVE WAITED”.
  • “from questions 55 to 59 is this your whole life or just the past few years? i answered as if it was my whole adult life. I have been taking Viagra for the last year and it seems to work good. Fairly firm erection for 70 yr old i still have the problem of dry ejaculation which i would prefer not to have. One urologist informed me that it was the drug xatrel (10mg) which caused my dry ejaculations.”
  • Good luck with this survey, I hope you get useful information. I don’t imagine mine is a huge contribution to the sum of PC/sexuality knowledge, it’s probably a bit of a statistical outlier – my main reason for taking the troble I suppose. There again in a survey of 3000 I don’t suppose you’ll get too many 70-year-old, vasectomised, ex-smoking, reduced-drinking, acoustic-neuroma-excised, 7-year retired penetrative-sex participating, urethra-blocked, radical-prostaectomised cancer survivors!
  • “Good survey, however some of the questions are too general. In my cituation, some of the question do not apply. Several years ago, I caught my 50 year old brother in law stealing from me and I called him on it. Well that caused a very big problem in my marriage. In the past 5 years my wife and myself have gone to 2 different marriage counsellors for help. Nothing was accomplished. The last counsellor told me “”the marriage is over.”” I prepared myself, mentally, for the bad news and I am still living in that atmosphere. I am constantly subjected to mental abuse and consequentely my desire to be intimate has been destroyed. I don’t dare seek outside affection because that is all the “”world”” needs to hear is that I have cheated. Then the mental abuse would be justified.  It’s sad that I can not give you better answers to your survey because I feel it is very important to other men and women. Please understand that many of the “”sexual questions”” I can’t answer because I don’t know. All I can say is befor I caught my brother in law stealing, sex was good, very good. After that, in my wifes eyes I am a peice of Shit. I tried to get us help, but I am the outsider and you know blood is thicker than water. If my days of sex are gone, thank God that I have beautiful memories of the good old days. I really have no idea if the Prostate Cancer and it’s treatment has had any effect on my ablility to have an erection, all I know is there is no need. That is unless things change and I doubt it. Thanks for listening, please help the other guys.”
  • “Hard to answer since most of the 12 years were satisfactory and only recently started hormone therapy which changed everything. Other issue is that I am 12 years older so always wonder what would be the natural course of my potency if I was not treated or had Prostate Cancer. Once it metastasizes and survival becomes an issue one’s oersoective on the importance of sex changes. I wish there were more resources available now to both my wife and i about achieving intimacy without intercourse. She does not like to use the internet for a source.”
  • “Have met men who simply gave up their sex life after PC treatment. Their partner was either indifferent or “”tired”” of sex and the man did not feel the effort to achieve erection worth it. So, they simply closed the door on that part of their life. Would the man and/or spouse feel differently with appropriate counseling about maintaining or re-achieving a healthy sex life? Don’t know–and this survey did not explore how many just quit having sex, why they quit (i.e., was it PC related or simply age related and the PC was just the final straw?), was quitting what he/they really wanted, would they feel differently if they knew more about sexual function with age and/or PC treatment effects and methods to overcome problems, etc. (i.e., lubricants that easily combat vaginal dryness to eliminate painful intercourse; dealing with effects of hormone changes vs. libido; effectiveness of aids to achieving erections; etc….) I suggest understanding “”how many”” PC patients quit having sex and “”why”” are important insights into the whole PC and sexual function picture. Have also met numerous men who chose their PC treatment (or no treatment!) based on treatment aftereffects rather than treatment effectiveness for the PC. Most have felt their sex life would be so altered or negated by the PC treatment that they chose less effective treatments in order to avoid aftereffects. Their doctors seemed to take a neutral stance, giving alternatives and accepting whatever the patient elected to do. Doctors need the assistance of robust education programs to better inform PC patients and partners so that doctors do not have to the sole advocate of preferred treatments…and PC patients need to get a better rounded insight–that the doctor may not have been qualified or comfortable providing–into PC treatment options and aftereffect countermeasures. Getting aftereffect treatment options from my own urologist was like “”pulling teeth””–I had to be aggressively proactive to gain the procedures I now use for my bladder incontinence and ED. PC is life threatening and certainly life changing–you’ll never get back to the pre-PC condition. Treatment needs to be a coordinated patient/partner/doctor effort and as aggressive as the situation will allow. The objective is to (completely) remove the PC as a life threat while preserving/restoring bodily and life functions/activities. Efforts, like this survey, should help support this comprehensive approach to PC and treatment. Today some do get the info they need, but there are still many who don’t. I meet men all the time who don’t have a clue what their prostate does; they don’t know why they need routine exams; they don’t know why early detection is important–and that 40 yrs old is not too soon to start testing. (I’ve even been told their doctor downplayed PC all together as a concern before very late in life–this shouldn’t be!) Thank you for your work. Sex is a very important part of life. PC does not equal the end of a sex life–only a change in it…and, in some respects, my sex life is better now than before my PC diagnosis–go figure! We need to get the word out–PC does not have to be a killer and it doesn’t have to stop anyone from living life!”
  • Hope this is helpful. I am 78 years old and lead a very active life. Untreated by one doctor he allowed my PSA to climb to 10.3.   Have a very loving wife and give thanks to God every day for all my blessings.   Bxxxxxxxx
  • Hope this will help in the future – we (my wife & I) should have had better information prior to the surgery – not that it would have made a differance in having surgey – we could have been better prepared after – we had to research and discover for ourselves – it was difficult.
  • I am 67 and consider that I have a high Libido. Obtain gratification from movies most times. Partner is not missing sex but every few months we have oral and hand stimiluation that does nothing for me but provides organisms for her.
  • “I am fortunite to not need any help I am not as active as I was before surgery, but I am cancer free for 5 years”
  • “I am now going to try erection injections. Nothing else worked so far. My first concern after surgery was incontinence. This whole nightmare was much more life changing that I was warned about. Little chance of incontience – had it , and then should be able to treat ED with drugs – no luck so far.”
  • i am perhaps too soon after surgery to answer most questions – it’s only been 3 weeks. Although my sexual desire is high, i have no erection capability. we are just at the stage to try viagra to see if that helps. we have not tried any other outside help to assist me in obtaining an erection.
  • “I beleive that a lot more attention needs to be placed on studying the impact of radical prostatectomies on a man’s orgasmic function. What really happens when the prostate and seminal vesicles are removed? What role do these organs (?) have in providing SENSATIONS to the brain which allow the male to experience an orgasm . . . with much less stimulation to the penis? We know that by massaging the prostate, a male can easily be brought to orgasm without even touching the penis. So why do famous surgeons (e.g. Dr. Xxxxx, etc.) think they can remove these organs without disturbing the orgasmic function in a male? We know that there is a distinct difference between ejeculation and orgasm. We also understand why men . . . after having RP surgery . . . will typically have dry ejeculations . . . except possibly for slight urine leakage or fluid from the cowpar glands. But when the sensations that are produced in the prostate and seminal vesicles are no longer there, the total amount of stimulation/senstion from various parts of the body have been reduced . . . perhaps significantly. In order for a male with RP to get over the orgasmic threshold, more stimulation is required from some other part of his body (e.g. physical stimulations . . . such as to the penis, visual stimulations . . . such as watching something erotic, thought stimulations . . . such as erotic fantacies, hearing stimulations . . . such as grownings from partner, touching stimulations . . . hands or mouth on partners breasts, partners proactiveness, etc. What gets me is that most articles or books I have read, tend to down play anorgasm ia problems in men. I believe far more attention needs to be placed on this problem . . . especially with respect to men who have undergone RP surgery. I believe that the drug industry could develop drugs to help overcome the anorgasmic problems in both men and women . . . just as they did in helping to overcome ED . . . using oral medication.   There are currently a number of over-the-counter lubercants intended to make gentials more sensitive to stimulation. These do help . . . but with more effort, I have no doubt that the drug industry could solve the problem. However, if medical community continues to downplay the problem and to write it off as a purely psychological problem, no one in the drug industry will ever invest in research to solve the problem . . . especially for men. Back in the 1950’s, the medical community wroteoff ED as primarily a psychological problem. They were WRONG about ED THEN and they are WRONG about the cause of anorgasmia problems in men who have undergone RP treatment NOW.” “I couldn’t enter my test results on the first page; They were   PSA 7.0 at diagnosis,7.5 at treatment,Geason 7 [3 + 4] Grade T2B,pot-op plus 2 months PSA 0”
  • I did try lavita. When we have sex the first orgasm is very easy the second is not easy anymore. What typically happens is that after one orgasm for me and 2 for her we wait until the next day and we are good again. As you may have guessed she is a wonderful sex partner even after 57 years. The laita did not appear to help for the 2nd orgasm for me.
  • I do now have penile implant, and so do not worry about erections.
  • I experienced “erectile disfunction” (impotence-I prefer) prior to diagnosis of prostate cancer and used a vacuum pump to achieve erection. I always works. The first time I used oral aids, they worked the first time and thereafter nothing. I was not incontinent prior to surgery. Never recovered continence after surgery — presently us a penile clamp — works fine. Have very little trouble with incontinence while sleeping — do not wear the clamp at night! Usually get up once a night. At 75, I’m not excited about using the pump as my wife ( a hottie) isn’t and never was pleased with the loss of penis warmth using the pump. I shall make an appointment with a male performance clinic soon — recently established in Baton Rouge and see if penis injection will provide erection. If no erection, no cost!
  • “I found injections worked very well for me. During hormone therapy my libido disappeared. Since being off treatment for the past year it has reappeared with a vengance. Mutual masturbation is semi-satisfactory. Since menopause and a hysterectomy, sex has been totally un-important to my wife. Bascially due to vaginal dryness and lack of desire.”
  • I had a good sex life, although we had sex about four times a month, with no issues. AFTER SURGURY, it has been very difficult to be arroused, partially because it is so un-natural. everything has to be planned and to much effort to make sure everything work, that it is diffiicult to stay interested. Nothing can be spontaneous. It is easier to just ignor the need to have sex.
  • I had trouble giving my wife an orgasm with my penis when using penile injections. However, after the penile implant, almost always. I always make sure she gets an orgasm, if not with my penis, then using alternatives.
  • I have a lot of trust issues with the medical community in my city of residence. I prefer to hear the plain unvarnished truth and that is very difficult to obtain here! I have problems getting appointments for tests and consultations on a timely basis and have resorted to having some of them done outside of the country. If I had not taken the initiative I would have had surgery and the cancer would still have been growing in my bones. I had a urologist with a receptionist that lacked basic human relation skills. The oncologist that prescribed the hormone treatment had no interest in discussing control of the side effects. My perception of him is that he sees me as a 68 yr old man, not a 51 yr old man. I have been refused truthfull answers by staff of the cancer institute. I had a urologist renege on a promise of a bone scan after a few months. Current wait to get an appt with him is 4-6 weeks. I was always able to arrange same day appts to see a urologist in Mexico where I work. Why are wait times so long for bone scans, MRI’s Cat scans etc. when other countries will provide them in a day? In approx 20 tries to contact the receptionist of my oncologist I have NEVER had a human being answer the phone. Only a voice message! I am consistently being told less than the full truth. This includes the internet. Where for instance are all the side effects of anti-hormone treatment layed out? I believe much of the problem that I have with the medical community is that they are taught to “reassure” the patient. It is very frustrating to get them to speak frankly and truthfully. I have a good GP but it took 5 months to get an appt for a physical exam. Then more than 3 months to get a biopsy. Then 3 weeks to get results. I got the results on the way back to work in a foreign country and could not get an appt with the urologist for a follow up appt for 4 weeks! I could go on further in regards to the problems I have had with the medical community in my home city but it would be pointless. In short I am disgusted at the quality of care in an industrialized country like this. I do not completely trust any of them! Thank you.
  • I have been impotent since surgery. Tried the pump with no success as far as being able to maintain an erection. As my PSA never went to 0 post surgery I started hormonal blocking 5-6 months after the surgery and lost all desire for sex. During the of cycles I did regain some desire and we experimented with the pump but was not able to get an erection sufficient for penetration. We used oral sex and manual stimulation during the off cycles, though I must admit there has been no desire for sex on this last off cycle which ended on 1 Aug. 2009. My wife and I do hug, kiss, and embrace and try to mutually support each other.
  • I have been successful once with caverject injection. I tried numureous times but was unsuccessful in getting an erection or putting it in the right area and having swelling where I did not want it. I do not like to inject the needle and in Canada we cannot get the epi pen type device. My urologist showed me one time only and never asks how it is going since he showed me. So I have given up on getting and maintaining an erection.
  • “I have everal problems that are very frustrating to wife and I besides those captured in the questions above: 1- pyronies disease gave me a curvature that makes masturbation difficult and penetrative sex very very difficult. 2-I experienced severe shrinkage of penis (length and girth) after surgery that makes intercourse difficult. On the rare occasions when I am able to penetrate, it isn’t satisfying to my wife.”
  • I have had an implant for 5 years, very satisfactory.
  • I have not had an erection sufficient to have penetrative sex since treatment.
  • I hope there are answers somewhare, to our problems
  • “I hope you can differentiate the success of erections after the two main methods of radical prostatectomy. My current urologist (he follows up on prostate cancer patients after treatment elsewhere but does no treatments for prostate cancer on his own and is quite objective) says he has seen many patients after a radical prostatetectomy using the laporoscopic/robotic method and every single one cannot get an erection after treatment. I, instead have had an open retropubic radical prostatectomy with a world reknown expert surgeon and can now after 15 months since my surgery, get about an 80% erection without assistance and can get a full erection with the use of Viagra. Some mebers of the support groups told me all treatments were the same, or each person would say his was best. And I do not understand choosing the laporoscopic/robotic surgery justifying it on the basis of fast recovery. Because no matter whether you have the laporoscopic/robotic or the open surgery, you will be hanging around home for the next two weeks with that Foley catheter hanging out the end of your penis. Also I am completely urinary continent.”
  • “I know that I may not fit your criteria as I was always a Gay man, but I wanted to contribute. To help you classify me I provide the follwing information. I have always been out to my wife, but I never acted on my homosexuality until I recovered from EBRT/Lupron treatments in 2007. It was then important for me to understand who I might have been. Unfortunately, I waited too long and my Libido has been damaged by Lupron (3 – shots during the first year only). It does not look like it will ever come back, so it is difficult for me to find a place in the gay world. Fortunately, I am sexually happy with my wife. Thought it might be important for me to expalin this as to not hurt your data or help you interpret my answers.”
  • I passed out when I self-injected. Then we went to Cialis with no positive result. Now back to injections, with my wife doing it. We have not had frequent sex beause it upsets her to do the injections and ruins the mood. Will keep trying.
  • “I surely hope people fill this out and we can get to helping MEN with disfunctional problems. It seems more applicable with Radicals.”
  • I tried to enter my birthdate but it would not accept the date! 08-30-1963 (man)
  • I tried to enter PSA numbers for question 10 but I kept getting an error message. It kept telling me to enter a positive number. I did and it still complained. My initial PDA was 2.4. My current PSA is 0.54. My staging is T2a, Gleason 6.
  • I tried to enter the stage for my PC at duagnosis but it was rejected. It was T2C
  • I want to make it VERY clear that all my attempts to have a reliable erection using injections or a pump were unsatisfactory, leading me to have a three-part implant at the Cleveland Clinic. Since then my sex life has been a total success for self and partner.
  • “I was lucky enough to do the research on different treatment options available. After my urologist told me there were other ways of expressing affection to my wife, I realized I needed to be my own advocate and research and find the best treatment for me. He was sure that DaVinci Robotic Prostectemy would be the best option for me. When you are holding a hammer, everything looks like a nail. He was not truthful with me in explaining the options I had. I am sure he believes his treatment was the best option, but in reality it was not. I wanted the best quality of life post treatment. I am continually amazed that Proton Beam Therapy is not discussed more widely. I found it and am so grateful that it worked for me with very few side effects. Why this is not told to PCi patients is beyond me. My radiation vacation not only eliminated the cancer, but also taught me more about myself and priorities than I previously had known. I was treated at Loma Linda and the experience was nothing less than positive in every aspect. And this story is being told everyday by most of the patients being treated this way.If more men knew there was an option that was available that did not have the side effects associated with the treatment, I think many more would be spared the life changing things that happen with other treatments. No catheters, no drugs, no incontinence, no impotence, NO SHRINKAGE, no surgery, no recovery time, no blood banking, no leakage. I hope this helps, and perhaps your next survey will address Proton Beam Therapy.”
  • “I was very happy after having my surgery that sex became even more enjoyable then it was before having cancer. I was fortunate enough to have had a great doctor to perform the surgery and lucky that he was able to do nerve sparing surgery. After surgery I went on a regiment of viagra followed up with shots. Within 10 to 12 months I was able to get a healthy erection without shots. Today 4 years later I can get a full erection and enjoy sex. The one drawback has been that my penis is not as large as it was before having cancer. I would be willing to discuss in more detail the wonderful recovery i have had if it would help others.
  • I’m glad you are doing it. Hope it helps. I had no problems completing it.
  • In my situation I can reach orgasm with stimulation but cant get an erection for vaginal penetration.
  • Intercourse attempted, but never successfully since surgery.
  • Intercourse has never been important to my spouse. My cancer has not changed that.
  • It has been almost 9 years since my surgery, and it has been very depressing for me. I don’t feel the doctors realize the impact it has on patients, and they just want to go on with their surgery and let the patients struggle on their on; they don’t want to hear about it. (At least the ones I have delt with.) Don’t get me wrong, I’m glad to be rid of the cancer, but it has sure left with a price; I sometimes wonder (at my age) if I would have been better off on the “watch and wait”.
  • “It is my personal opinion that very little realistic information is available to the prostate cancer patient and his partner. This is truly a disease that impacts the couple. I wish that I had known about Trimix after my surgery. I would have started that within 2-3 months after my surgery. I truly believe that this would have given me an opportunity to heal the traumatized nerves. It would have also helped me avoid the degree of depression that I experienced. Every man who comes to me now, I advise them to demand Tri-mix or Bi-mix from their Urologist….or change their Urologist. Also, this is a couple’s disease….more counsel should be provided to the couple.  Finally, why is so little information about Prostate Cancer given in the media and by our government. Breast Cancer has mass coverage in comparison. There is definitely a gender bias in the media and government. Men are just advised to deal with it and keep it secret.”
  • It seemed to me that the survey presumes all the sexual difficulties are a result of prostate cancer treatment. In my case, my ability to get and maintain an erection seems largely tied to libido. It now takes more to stimulate me than it used to, but when well stimulated I’m able to get and maintain an erection just as well as before my prostate treatment. The drop in libido (and drop in erections without stimulation) began to occur about 8 years after my seed implant.
  • It’s depressing.
  • Just to re iterate. Not all questions distinguish between now (on hormone therapy) and a year ago, and a year hence, when I wasn’t and won’t be
  • last part of survey contains ambiguous language…..does ‘intercourse’ include mutual masturbation and oral sex…….. ie, what ‘is’ is
  • Libido seems to have decreased and spontaneous erections are harder to achieve and maintain
  • long over due
  • MD never discussed penile rehabilitation, just “give it time”… and then it was too late. Wife objected to injections and I’m too old for implant. I do not trust MD’s at this point in my life.
  • More men who have nerve sparing surgery should use the shots.
  • My answers are based on not having a partner (wife passed away 2years ago) & having my surgery 3 weeks ago
  • My doctor had me on a 1/4 viagra pill in the first three months after surgery. Once I saw I was getting erections, at about 9-12 months post-op, I resumed sex.
  • My only issue is no ejaculation. There was a period of time for about 2 months that I could not get an erection. I spoke with my radiologists and he referred to a clinic in Kxxxxxx but could not get in. My biggest issue is no one wants to talk about this subject especially doctors. No discussion prior to treatment so that my wife and I could be prepared. Another side effect that I had during the first year after treatment was pressure and pain in my rectum when I had an erection.
  • “My partner and I were not terribly sexually active prior to my being diagnosed with prostate cancer. Having prostate cancer and being treated for it simply eliminated sexual activity from our lives. I am sad about that, but I don’t know what to do about it. My partner doesn’t want to discuss the matter, I have to take drugs (Lupron, etc.) that pretty well eliminate my sexual abilities, and the doctors I have dealt with have been utterly useless on the subject. It is like they simply don’t care about how the disease and treatments for it affect you mentally. If whatever they do keeps your PSA low, as far as they are concerned they’ve done their part, and how much damage has been done to you/your marriage in the process is of no consequence. n common theme in the support group I attended for a year or so after being diagnosed/first treated was the phenomenon of what we called “”The Incredible Shrinking Penis””: –It didn’t matter what treatment people had had, whether surgery or radiation, everyone in the group was as certain as they could be that their penis was 30 to 50% smaller afterwards. I KNOW mine is. But universally doctors say it isn’t true/doesn’t happen/etc. They lie. It does happen, and it does matter. Good luck trying to shed some light on this subject. It is huge, especially for couples in their 40’s or 50’s who ideally should have had many years of sexual intimacy to look forward to. It is pretty bleak when one is this age, and sexuality is dead. Damn doctors need to get their heads out of their asses and start dealing with this issue more honestly and openly, and not leave it entirely to the patient to try to figure out on their own. It is as much a part of the disease as is any other part.”
  • My partner is passive during sex. Leaves it to me. Without stimulation I have a difficult time at 78 years of age. I believe that I would not have much of a problem if I had not had prostate surgery.
  • “My prostate cancer was all ready in stage 4 when found and spread to my bladder, seminal vesicles, vas deferens, neurovascular bundles on both sides, lymph nodes on both sides of abdomen, and soft body tissue. My prostate gland was over 90% prostate cancer. Even with positive lymph nodes they operated for the purpose of debulking and to help with my survival time. With all that was removed and also taking Lupron for over 11 years straight with no break, my libido was basically zero and then to lose all of my posessions and savings, insurance topping out while a patient at MD Anderson under a protocol my libido was totally gone and depression was at it’s worst.”
  • My sexual connection with my love is mostly “carinos”: caresses, touching, oral sex from me to her, aimed at clitoral orgasm for her, laughter and kisses, hugs, etc etc….
  • “My sexual lilfe is nothing after surgery. After several failed attempts my partner has completely given up and lost all confidence and interest in me. With the exception of a few self masturbations, there has been no sex in my life. ps. my wife is not interested enough to take this survey.”
  • My wife achieves sexual satisfaction from my touch over 90% of the time prior to my attempts to have intercourse with my semi- or erect penis.
  • My wife and I pleasure each other orally and that is fine with both of us.
  • My wife and I think you are covering a very important area that has been ignored by the medical community…Thank you for your research and we hope you can reach many of those survivors who think their sexual life is now over after prostate surgery….
  • My wife died about 18 months before treatment started so sexual opportunities have been limited. I can ejaculate with a partial erection which I can achieve without medical help. My orgasms are not dry but volume has decreased.
  • “My wife has gone through menopause and has experienced vaginal dryness for several years.   This has caused vaginal pain during intercourse and consequently she has pretty much shut down. I keep trying and suggesting alternate methods but have had no success to date. I’m glad that someone is studying this and hope that there will be some suggestions based on the results. I am very interested in the results and hope that they will be published when complete.”
  • My wife left me just before I was diagnosed which makes my recovery quite difficult. It’s hard to put on your eHarmony bio that you have ED. One woman I dated seemed interested until I told her I had recent prostate surgery and she never saw me again. Very discouraging without any form of helpful mate. Wish there was a group of caring women who would aid the victims of this emasculating disease.
  • My wife was not willing to give me the opertunity to attempt intercourse and I had no sense of touch or feeling after the operation. Testosterone levels were very low and therefore my own sexual drive was reduced to very low. Antiandrogen drugs given prior to the operation lowered Testosterone to very low levels and I never recovered.
  • Never tried assistance. To date it has not been necessary.
  • Nice range of questions and validation attempts.
  • nnot enter T1C in stage
  • None
  • “Obtaining an erection has not been difficult. Having intercourse with a 4″” penis is difficult under any circumstance, but add a wife without any seeming interest, and it isn’t attempted. Before hormone therapy, I may have been 5″”, but that seemed to be enough. Our “”love making”” before prostate cancer had involved lots of manual stimulation to my wife which brought multiple orgasims. The time of penetration was relatively short, but also seemed to produce orgasims. You probably should not count my responses to this survey since I don’t have ED. At least the survery allowed me to get some frustrations off my chest. Oh yes, I have talked with my wife a little about our lack of love. She doesn’t know what to do and doesn’t seem to be interested much in my feelings of inadequacy. She hardly ever was the one to start love making before. It was almost always up to me. She’s doesn’t have a clue now.”
  • Once again, this survey does not apply to losers like me
  • Only treatment I have tried to date are the oral medications I stated plus Muse. None worked . I must say Cialis gave me the most “promising” signs as I was able to have an erection whilst masturbating a couple times .. I will be trying the injections in January 2010 as I am part of the Prostate Rehab program run out of Toronto General Hospital.
  • Page 2 does not define whether the questions are before or after cancer treatment. I answered as for after surgery.
  • Penetration is not the problem, not reaching orgasm is. Information on this problem is in short supply.
  • Penile shots are what we decided on way up front. They worked quite well for us. After reoccurrence, and three intermittant hormone treatment periods, problem now is libido is non-existent. I have no urge to even start any floor play, etc. (got off zoladex mid Dec 08, now mid Oct 09; maybe body is just not going to “snap” back. Snap back is a bit of a joke!)
  • Question around with med aids or assistance too general – eg drugs dont work – injections 100% but painful so not completely satisfactory.
  • Questions 61-63: are answered in the past tense: which is to say pre prostatectomy.
  • “Restrictive format. Married for 9 years after treatment to supportive but increasingly uninterested spouse; sex infrequent at end. She asked for divorce — “”done with the marriage thing.”” New loving partner of 3 months — not only deeply loving, but sex is a usual daily part of the relationship, without asking or begging or scheming or manipulating. How come I had to wait until I’m 65 to discover this woman??”
  • Since my operation, I have not had to use any medical aids or assistance.
  • Since viagra works so well, I really do not attempt intercorse without it. My wife is able to acheive orgasim with use of vibrator & lovemaking.
  • Some hard to answer. Had a partner 1st 3 yrs. Dated sporatically past 7 yrs, only 1 relationship lasted several months. Intimacy continued satisfactorily only with 1st partner. Extremely difficult to start new relationships with near zero libido. Often doesn’t seem worth the trouble.
  • Some of the implications of these questions appear to center on whether of not we can have successful intercourse or not. Many men I believe must reach a point where they come to peace with the situation. Is sex more important than life. We also must learn that our partner, especially nearing age 60 is more interested in feeling loved, than having rousing sexual encounters. The intimacy that results when the man concentrates on the female’s needs, and bringing her to an aroused state and orgasm is a satisfying sexual encounter for both.
  • Staging with integer does not apply in Canada: Revise item 2
  • survey does not cover use of drugs like inj lupon
  • “Thank you very much. I would be interested in the survey results when your study is completed. I’ll send a follow-up email. I feel that my prostate cancer situation may not be exactly what you were looking for….since I have not had any invasive treatments. I am in an active surveillance mode. My cancer was found incedently after a TURP procedure. My digital rectal exams have always been normal and my PSA has been flat (around 1-2) for the 10 years I’ve been getting them. A follow-up normal biopsy (18 cores) found no cancer. I’ve thus had no changes in my sexual function before and after diagnosis. Good luck.”
  • Thanks for being willing to research this area. For individuals like me, it’s important to see that there are others out there that have similar issues.
  • Thanks for doing this. I wish that the pills were cheaper so I could afford them.
  • Thanks for looking into this.
  • Thanks for the concern, I my case and I am sure in others, injecting medicin into the penis is somewhat painful and difficult to do. A instrument to assist in this proceedure would be great.
  • Thanks for the opporunity. While I have a spouse, I have no sexual partner. She has reached the conclusions that no sex is better then flusterated sex. She has given up and refuses to even participate in this survey.
  • Thanks, I wish I had a partner willing to work with me.
  • The frequency of natural erections seems to be diminisioning the past 6 months but I have also moved 3 times in the past year and renovate for the last 6 months so I have been over tired a lot of time which I know greatly effects quality sexual timing.
  • The main issue is achieving an erection sufficient for penetration. Once penetration is achieved, the erection seems to improve and most of the time intercourse is satisfactory
  • “The only medical assistance that worked was my penile implant. Sex has changed with the implant – arousal is gone – has changed the relationship with my wife – something sweet has been gained. Still trying to define that.”
  • “The problem with this survey is that it does not allow for stages of treatment – ie it assumes that repondant has only one form of treatment. ie. surgery followed by homone deprivation several years later is not real catered for. Therefore some of the reponses may appear to invalid”
  • The range of time mattered a lot. It’s been over two years. The first six months there was almost nothing; now after two years we can often have enjoyable sex without Viagra, although we usually do it with Viagra to be sure we have the fun we want.
  • The requested numerical number of the stage of cancer which was T1c was not allowed after many attempts to “correct” the “positive number” I resported to using just the number 1 and it was allowed. Seems not to be the best information for the purpose of the survey.
  • The survey seems quite complete exept for two areas. The smoking and drinking questions did not give enough options to give correct answers. The survey was not accepted because the PSA, Gleason, and Stage was not it whole numbers. I put in whole numbers several times and it still would not accept it. Finally I removed them.
  • The survey was good. I am married for 42 years and my wife does not appreciate the importantance of a sexual relationship – therefore we have not had intercourse or any form of sexual relations in over 15 years.
  • “the wording on the last 2 series of questions is confusing. Are these questions about conditions following treatment? ( or prior to treatment?) Also, the number of cigarettes per day in that series of questions is confusing ( number of packs per day???”
  • This last block of questions (Without Medical Aids/With Medical Aids) is not really clear. I am assuming that this last “With Medical Aid” means since I’ve had my penile implant???
  • This survey assumes that there has been some significant amount of time since prostate cancer treatment. In my case, it has only been one month so it was hard to answer some of the questions.
  • This survey is so slanted toward straight couples that I almost didn’t complete it.
  • “This survey seems to assume the survivor is heterosexual. Because I have been bisexual all my life and the father of 2 children I raised from childhood due to their mothers’ death from breast cancer, I have been “”closeted”” since my wife’s death. My wife was aware of my sexuality – it was never an issue – we were happily married. My son is married, my daughter, who lives with me – ironically “”came out”” to me 3 wks. prior to my diagnosis – so naturally I came out to both my adult children at this time they are ages: 30 and 25. I was ready to go out and take my chances at a relationship when this occurred. Since puberty until 6 months after treatment I could count the days of “”no ejaculation”” on one hand and then it was only due to hospitalization, or because I was in a place where it would have been difficult to “”assume position”” – naturally because of the frequency masturbation has been my daily routine – still is even without erection – the loss of erectile function has been emotionally devastating to me, as well as the shrinkage of the penis due to treatment – I never knew that at age 60 my sexual life and hope for a partner and/or intimacy would be over – I’ve become embittered and dealing with suicidal depression since.”
  • This survey was informative in and of itself. The questions have informed me that others are experiencing what I am.
  • “Though not currently sexually active I do have regular nocturnal erections and do masturbate. Orgasms are a bit more painful since radiation, but not enough to be discouraging. As result of the surgery I also have a slight curvature of the penis (doctor diagnosed).The answers on the previous page (erections/intercourse) were from my 2nd marriage. Part of the reason for the divorce in my first marriage was a lack of sexual intimacy. My second wife was quite different from the first. She thought the lack of ejaculate was wonderful, made oral sex much more pleasant. The curve in the penis was another plus, she felt that it stimulated her in the right place. Good survey, but I think that I am a little off the curve. Hope it helps.”
  • Thought provoking and timely…
  • too long….
  • TriMix injections work but just the idea of injecting the penis is a turnoff. At 76 years, with 4 marriages (and divorces) and 50 plus previous satisfactory relationships, the need for intercourse is not high on my list – although my 70 year old love would like it.
  • “Very interesting survey. If I can help in anyway you can reach me at this email adress or Jxxxxxxxxxxxx
  • We are currently not having sex…although I have a penile implant which works…I still have performance failure issues and struggle with my inability to ejaculate (sometimes urinate) so our sex life is not so good now…it scares me…as I also have PTSD issues which have resurfaced as this is tied to agent orange exposure in Vietnam …I do not think my wife is having as much of a struggle with this as I am but we try to stay connected emotionally ..thanks for helping us…no one really prepares prostate cancer survivors for these issues…but our US TOO SUPPORT group has been a REAL BLESSING!
  • We assume that “with medical aids or assistance” includes medication such Viagra.
  • We discovered that it is not necessary to have intercourse to achieve orgasm.
  • We tend to keep too busy and have not been concentrating on sex lately. Levitra almost works.
  • We use a pump almost entirely, and the answers here are based on it’s use.
  • “Whats the difference between an egg, an whipped cream and a blow job.
  • Answer You can beat an egg, and you can beat whipped cream, but you can’t beat a blow job !”
  • Will help future survivors more than me. Covered lots of areas I no longer think about anymore.
  • With penile shots it worked reasonably well.   I had a penile implant, but, had complications after surgery and it was removed. Two months later I have not tried shots again, but, am not optimistic it will work.
  • “Without giving away who I am (maybe too late), over the last few years (since my Radical Prostatectomy), I have been an advocate for a unanimous patient driven survey. Your questions are very good. One thing that is missing is a “Yes” or “No” category, in some places. This leads one to believe that I didn’t want to answer the question. When to do so, would be misleading. For instance – 52. Do you have an informal support network? 41. If your physician discussed with you the possibilities of having problems with sexual function after treatment – he did but I can’t remember the percentage. 43. If you are on androgen deprivation – I was on ADT but am not, at this time (hopefully never again). Yet the questions around this are for those presently on ADT. As it wasn’t that long ago, I could have provided helpful answers. I wish you the best of luck.”
  • “You asked no questions about the emotional “”value”” or “”quality”” of the relationship, either before or after treatment. Mine was/is “”low,”” and that has had an important effect on my sexuality before and after treatment.”

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instead of spending a lot of time explaining why you can't help the patient, spend just a little time on how you can help.... john mchugh (just made it up this week)

So back to my tooth…the saga continues…

  • several months pass and I go back to the original again because of a cracked temporary crown and in the process of fixing me a new temporary he notes that the bone structure above the tooth has not changed like one would expect if there was a deep enough crack to preclude a crown.
  • “I’d like you to see an endodontist and see if you’d be a candidate for a root canal.”
  • “What does this mean? Can the tooth be saved?”
  • “Let’s just see what he thinks. I’ll call him and his office will call you for an appointment.”
  • I go to the root canal doctor and at that visit and after my fifth set of xrays of my teeth I experience first hand the dreaded and universally feared “root canal.”
  • It was fine except for the part where a “lateral canal” did not get the effect of the lidocaine and I felt a lightening bolt that shook me to my core.
  • “Huhhh. That must be a lateral canal. I’ll put more medicine in there. You  don’t see that often.”
  • After the root canal I am advised to return to my dentist for a crown on top of that (whatever he did) in two weeks.
  • The next night while having a potato chip half of my tooth breaks off and have to spit out the chip and the tooth to keep from swallowing the fragment.
  • The next day I am at the dentist. “I was only eating a potato chip,” I said in disbelief of my predicament.
  • “John. There are some pretty tough chips out there.”
  • I get new crown. I go back to the root canal guy and we determine that all of the root may not have been reamed out and I go through a second root canal.
  • After this one I developed a sinus that is like an abscess of the gum that swells to the size of a large grape and then bursts one night in my sleep.
  • I go back to the root canal guy and does the reaming yet again and floats the thought that I may have a crack that is extending too far to fix or that there is an aberrant root he cannot get to. He calls over an associate in the office next door to explain my case and see if I am a candidate to have the rood excised through my gum…periodontist an “apicalectomy.”
  • I don’t go back for about six months until the area swells again and decide to have it checked.
  • I see the periodontist.
  • He does the apicalectomy….an incision in the gum, the offending root is then drilled and reamed out.
  • As bad as the above seems all was done professionally and I have confidence in my doctors.
  • About six stitches are placed in the gum that hang around in my mouth for about a week.
  • I am now in the waiting phase to see if it will be successful. My gum is still sore but not swollen.
  • After the apicalectomy the left side of my face “swole up” like I’d been in a fight or having had an allergic reaction to shrimp.

So what to make of this?

You have been told you have prostate cancer.

You have about six options to include doing nothing.

You read, you listen and you gravitate to a decision.

Treat it like my tooth. See the urologist, the oncologist, the radiation guy, speak to friends, get a second opinion, hell…do it all.

But don’t whine at the end of your treatment that you were forced into something because you were not given options and now you feel it was all about money. Really?

Go to all the “ists” like I did. I have no regrets. All my guys were great and made clear to me that the treatment of a “crack” is not a science but an art and a lot of wait and see. I get it. Do you?

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